endomuze

ADHD and autism are more prevalent amongst endometriosis patients. What can patients and doctors do to improve communication and patient experience?

For doctors:

–Course of the appointment; Make clear beforehand in a few words what the appointment is about and what will happen. Don’t announce a transvaginal ultrasound or having to undress on the spot , this is distressing. An autistic patient does not have the headspace to switch tasks in their brain. To check in, do I want this? Am I ok with this, do I feel safe? I often feel violated after an appointment, eg. because an intimate subject that was touched that is not relevant and this time and is not something I was comfortable talking about.

–Goal of the appointment Make clear beforehand which questions you want the patient to have answered. This maybe takes more prep work, but makes the appointment more efficient and thus saves times and frustration in the consult. Modern digital environments are perfect for this, and in a lot of cases standardised questions can work.

–Read patient shait If you send out questionnaires, read them. Read patient history before an intake. If you have no time get help from a doc in training, but always scan shait yourself too.

Nothing gives me more error than having to spew up a patient history and questions I already answered (and have to answer with other doctors as well). It takes a lot of energy not to meltdown or shutdown. Often we also have long and complex history, co-morbidities (other diseases), and having to regurgitate it all give a high chances of forgetting stuff or focusing on the wrong thing. Doctors say, yes but I want to hear it from the patients mouth, is more reliable. Doesn’t work that way with us. You can ask, you gave this pain score, can you say more about it? Is it correct that .. etc.

–Pointed questions How are you? Is too broad. Error. Then as an autistic I have to think about what exactly do you want to know, is this a social talk where you want to know how my vacation was? Or how my sick dog has been doing? How my fibromyalgia is? Ask, how is your pain since last discussed ? Where do you feel pain? What are your thoughts now on starting medicine x ? Etc. whatever the purpose or the goal of the follow up was.

Another one I don’t like is explaining why I am here or what my complaints are or what is your question to us. I spent a lot of time getting a referral, answering questionnaires, sending you documents. It is all there. Also why am I here. I am here because I am sick and I want help and expert opinion. I would like to improve on my quality of life. I am not here for a coffee or night out, makes sense ;)?

-If you can’t or fix an issue, or will not refer, if the question is not relevant or important, do not ask. Eg. invasive questions on sexuality or questions on past pregnancies if the patient does not want to be pregnant. It is upsetting to be open and vulnerable and then to have a dead end. If the time is limited I’d rather get a diagnosis then talking about my hobbies or work I can’t do.

-Patients with ADHD have a looot of different though trains, are detailed oriented. We might need your help to stay on track or the consult will derail. When this happens I feel embarrassed for taking up phycisians time. Perhaps more consults or e-consults are necessary. We might take up time, but as doctors said: I also learn from you. I do so much research and come up with angles no one thought about.

–Explain your reasoning, why a test is necessary, why you recommend this treatment plan. I am not going in chemical menopause just because you think it is a good idea, I want facts, arguments, as scientific as you can please. In my case I speak doctor so you can save brain space to rattle me through it. For someone else, you might have to take the tempo down a bit.

–Open up summaries of consults in our patient files so you know you are on the same page and both agreed on what the next steps are. I know you are also very busy, and worry sometimes if agreements will be met or forgotten. Check facts . There are so many factually wrong letters going to GP’s to inform them and private info I did not consent to sharing. Error!

–Dim the lights . A darker, calm environment gives less stimuli, distraction and feels safer.

–Give us time to decide. Do not, very important, do not expect us to take big decision right away, unless we say we really want something. We need time to process, to ruminate. Time to go through all the deer path in our head and the what if, then, then this , coming back to xyz, thoughts. Maybe time to research if that is the patients’ gist. If we say we are apprehensive about a treatment, don’t try to force it down. Say, think about it, let me know further questions or concerning and I can make it happen any time you want it. If there is a time constraint due to risk, set up a reminder with an assistent that can check in.

–Shared decision making, equality. This could be very empowering. Respect bodily integrity. This means end vote and consent is mine unless I gave you a free pass during surgery. If your hospital has shared decision making, also apply it when you disagree with the patient, but the patient wants to make their informed decision. If you can’t live with it, start second opinion trajectory. Do not pressure for treatment patient is opposed to. I have had prescriptions sent for drugs I did not want for good reason, or heavily pressured to take Mirena. Both did not work out well for me.

–Pain scoring If someone asks what pain score would you give I think how the hell would I know? Autistic people have trouble feeling body sensations , and as chronic pain patients, we tend to dissociate and try not to feel pain otherwise we’d all go mental. Plus, if you’ve had terrible pain and chronic pain , you tend to score lower. I have had a broken bone, so I tend to factually compare it to that . Not everyone had that experience ;). It helps to be able to think about it beforehand. And to have question that ask more about the effects of pain rather than the experience itself, do you get fatigued from pain? Are you impaired and in what way from the pain? Do you have trouble sitting or standing up? Does the pain wake you up or prevent you from falling asleep?

–Aloofness. When I broke and dislocated my shoulder at 11 years old, I was quietly sitting in a corner. It resulted took two hours waiting time at the ED to give me any pain killer at all. Some of us don’t always cry, scream , shout were others would do so. You might underestimate our experience. I am always able to say something about facts, even after the most shocking experience or excrutiating pain. That does not mean the experience was not bad or that I am ok. We may seem as we do not care or are unaffected, but in our head a lot is going on. We cannot feel and talk at the same time unless there is code red in our body and then we cannot control emotion anymore.

–Don’t assume, be transparent. It is very confusing to feel you are not being heard or taken seriously, but at the moment you do not fully grasp it because it is covered in clouds or friendly belitteling ;but sense something is going awry . Or read assumptions have been made. I would rather you self evaluate and pass assumptions by me, speak out some thoughts so we can discuss it then to get upset in hindsight cause the consult was pointless or you read about presumed hysteria or lifestyle choices in your chart.

For patients:

–Be pointed. Doctors have little time. Focus on one or two most important questions. You can save up more questions you have to ask them in a dosed manner. Write them out beforehand.

–Do not write a dissertation. I know I am one to speak, but hey this is my website and I do my best, want it to be comprehensive!

If the story is too long, and detailed per verbal or written, the message and question get lost. It is not read. Use chatgpt (anonymised) to help summarize, or ask a friend/family member if they understand what you are saying

–Prepare for consults. This is a difficult one. I would freeze and not do it, because I knew the chances were high I would get dismissed. And I felt a whole lot of shame and insecurity, fear, over asking help and being vulnerable because of it, you feel unentitled to help and a cry baby. It is hard to verbalise (put into words) for us how we feel. Just think, any prep, any brainstorm is better than nothing at all.

–Break it up. Ask yourself, what is my most bothersome symptom or issue right now? What disrupts my life? What do I need to live better? You can also brainstorm and then pick one or two from the list. And bring the list in case they want to know more.

–Where in my body do I feel this? What sensation do I feel. How intense is it. What does it stop or block me from doing. When do I feel it. Track if there is a relation eg. with your menstrual cycle.

It helped me , also in order to stop doubting and gaslighting myself when only a unicorn doctor would believe I am sick; to write a patient history, a timeline with how my symptoms developed per what body system (neurological, gynae, gastro, pulmonology etc) , what relevant diagnoses I got from which doc/hospital in what year. What tests I had. I also have a one page summary for highlights. Put all blood tests etc in a spreadsheet. This also prevents unnecessary repeat testing.

–Write the doc beforehand what your question is and your most important illness experience. This helps me organise my thought and to keep a spine. When I was sent away everywhere, I sent my timeline and a request to be treated and evaluated factually. To put in some effort to try and pragmatically help me. How much distress being dismissed or not helped causes me.

–Write down beforehand what you have done yourself and what help you have sought to help ease your symptoms.

–Think about what tests you are ok with (generally is it good to allow a doctor to do invasive testing, as it gives them more information), and what treatment . There is a lot of information out there, and chatgpt cannot give good advise, but is fine to get more information from. Fact check information you get.

–Buy yourself time. Just like above. If the doctor does not buy you time, prepare it yourself with some sentences, asking others for input can be great. Can I think about that please? I do not know yet, and I feel uncomfortable taking a decision right now. Can you send me more information (eg on side effects, effectivity etc).

–It is ok to say no. Respect authority and knowledge, but just because someone is an authority, does not mean you have to say and do everything . And sometimes they are wrong. Some of us soak up a lot of info, and I am trying to stop masking how much I know without getting into a discussion